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‘Whose agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism stakeholders

PARSONS, Sarah
YUILL, Nicola
GOOD, Judith
BROSNAN, Mark
2019

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Technologies play vital roles in the learning and participation of autistic people and yet have mostly been conceptualised according to a medical model of disability. In this stakeholder review, the comments of 240 participants from a two-year seminar series focusing on autism and technology were analysed to co-construct an understanding of how research could develop more inclusively. Our socio-cultural analysis shows that stakeholders were very positive about the roles that technologies can play in many areas of life, but that these technologies need to be developed and evaluated according to the needs and preferences of autistic people and their families. We propose an inclusive common social framework for research based on the core themes of social inclusion, perspectives, and participation and agency. Such a framework requires the field to recognise that some current practices are exclusionary and that a commitment to action is needed in order to make positive changes.

Discourses of service user involvement in meeting places in Norwegian community mental health care: a discourse analysis of staff accounts

YNNESDAL HAUGEN, Lill Susann
ENVY, Andreas
BORG, Marit
EKELAND, Tor-Johan
ANDERSSEN, Norman
2016

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In previous research, meeting places have been favourably addressed by service users, but they have also been contested as exclusionary. In this participatory explorative study, we sought to perform a contextual analysis of meeting places in Norway based on a discourse analysis of three focus group discussions with 15 staff members. We asked the following question: how do meeting-place employees discuss their concrete and abstract encounters with service users and their experiences? We focused on service user involvement, which was largely analysed as neoliberal consultation and responsibilisation. Service users were positioned as resisting responsibility trickling down and defending staffed meeting places. Social democratic discourse was identified in the gaps of neoliberal discourse, which is noteworthy given that Norway is a social democracy. This relates to global concerns about displacements of democracy. We suggest that meeting places appear to hold the potential for staff and service users to collaborate more democratically.

Using participatory and creative methods to facilitate emancipatory research with people facing multiple disadvantage: a role for health and care professionals

KRAMER-ROY, Debbie
2015

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Participatory and creative research methods are a powerful tool for enabling active engagement in the research process of marginalised people. It can be par- ticularly hard for people living with multiple disadvantage, such as disabled peo- ple from ethnic minority backgrounds, to access research projects that are relevant to their lived experience. This article argues that creative and participa- tory methods facilitate the co-researchers’ engagement in the research process, which thus becomes more empowering. Exploring the congruence of these meth- ods with their professional ethos, health and care professionals can use their skills to develop them further. Both theory and practice examples are presented.

Challenging perceptions of disability through performance poetry methods: the ‘Seen but Seldom Heard’ project

HODGES, Caroline E M
FENGE, Lee-Ann
CUTTS, Wendy
2014

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This paper considers performance poetry as a method to explore lived experiences of disability. We discuss how poetic inquiry used within a participatory arts-based research framework can enable young people to collectively question society’s attitudes and actions towards disability. Poetry will be considered as a means to develop a more accessible and effective arena in which young people with direct experience of disability can be empowered to develop new skills that enable them to tell their own stories. Discussion of how this can challenge audiences to critically reflect upon their own perceptions of disability will also be developed.

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